Here is a news flash. Words matter.
A few weeks ago, I was at the healthclub using the childcare to take care of some paperwork. I overheard two women discussing autism. My first thought…this word is either increasing in social significance for everyone OR it’s following me.
Well more people joined the conversation, including myself. And one courageous woman said (paraphrased) “I don’t know why the diagnosis is given without a care. It’s like here, your child has autism. Stick him in therapy.” She continued to describe that the empty words were heavy and she was left, after the professional jargon, to research and see words like functional and low. Not to mention that crazy long wait-lists (that are almost shameful…it’s like waiting for a serious operation and the surgeon keeping you on his list rather than referring….but I digress). I listened and said “Yes, I don’t think at the diagnostic level, we do a great job of giving this kind of news without evoking a sad despondent feeling.”
In fact, while relieved, rare is the happy parent with a diagnosis.
Here is why:
- Children are born.
- Parents have dreams.
- Waitlists for therapy. Traffic and commuting to therapy. Copays -Deductibles- bank account draining for therapy is not the dream.
- Some words associated with therapy, autism, etc. are intially and (perhaps long-term) aversive because…it’s not the dream.
Coupled with time, effort, organization that EVERY family IS challenged with, these are, often times the barriers to parent training.
Parent Training, as critical as it is for long-term success, will not work until providers remove the “Do This” perspective in how we perceive our role in the training process. In fact, let’s adjust the name Parent Training. It is in fact coaching. Coaching is looking at certain skills of the athlete and developing them to be a better version of themselves. Training implies that ‘your current version of you sucks…let me train you to be what I think you should be’. I know we don’t believe that, but from the perspective of the parent, this may be true.
So here is what we do, we change our language.
- We stop calling kids cute in professional meetings like case reviews, progress meetings, and IEP meetings.
- We listen and stop trying to prove our worth with all of our credentials behind our names.
- We adjust. We listen. We meet people where they are. We coach.
- We realize that we (at our best) are not the dream. The dream is little league, cheer-leading, choir, afterschool clubs, and prom. So what is a provider to do, be humble, listen, and learn. We begin with humility and say who we are and the collaborative push we will have with our families to get closer to the dream.
- We train our therapists to be Disney Land…because therapy is hard. Some days our client’s don’t feel like going ‘to work’ and want to call out. But they allow their parents to drive them and the come. So BE Disney Land. BE FUN and love your time with them no matter the bodily fluid you feel, the cry you hear, and all the silence. BE DisneyLand.
At Momentum, we have an ABA Coach Model that works well for many families. It’s 1:1 and provides families with the support they need to address skill improvement, behavior reduction, and more. But it is coaching…giving the best of what we know and do as providers and teaching you to apply this knowledge while still being you- parent- the empowered parent. 😉
~and from all of us at Momentum Therapy
Happy Mother’s Day to all Aunts, Mother’s, Godmother’s, and those that drive our children to therapy and activities. We salute you. And while many don’t ever officially get a day off, know that we see you, we hear you, and we salute you the brave soul that you are…even when you cry.